The Institute for Bioethics, Health Policy, and Law at the University of Louisville, and collaborators from The Hastings Center, Stanford University Center for Biomedical Ethics, and Michigan State University, propose to develop, offer and evaluate a research ethics training program in human genetics called EDGE, or Education in Genetics Ethics. Course development will be responsiveness to identified unmet needs in research ethics training based upon a large scale national needs assessment conducted among a target audience of investigators involved in genetics research, including academicians, clinicians, laboratory practice professionals, genetic counselors, nurses and others involved in human genetics research. he target audience will be recruited as course participants, with special effort made to recruit those who have been traditionally under-represented in the field of research ethics. Interactive instruction for course participants will occur through a 2-day on-site workshop offered at different locations throughout the U.S. six times a year, and a computer-mediated Web-based course. The on-site course will include short, didactic sessions that address genetic research issues using general ethics principles; small group problem-solving and discussion sections involving genetics research ethics issues using specially developed case studies; plenary sessions highlighting historical and developing trends in the field provided by experienced investigators and scholars in the field; and evaluation sessions to assess research ethics experience and knowledge gained. The computer-mediated interaction through a specially developed Web site that includes instructor-provided electronic text or recorded presentation option, on- line readings, asynchronous participant problem-solving case study modules, interactive e-mail, chat room and e-board facilities, links to relevant Web-based resources, and on-line evaluation materials. Both courses, will provide continuing education credit, and are easily sustainable.
The specific aims of this project are to: 1) develop a specialized and transportable research ethics training program based upon the unmet needs of genetics research; 2) deliver the EDGE training program using on-site and online methods; and 3) evaluate the impact of the course. The project includes a curriculum steering committee comprised of experts in the field of genetics research and genetics education, as well as select project team members, to provide on-going advance to the project.
